Yvonne Jansen

The contribution of qualitative research to the development of tailor-made community-based interventions in primary care: a review

BACKGROUNDnIn recent years, a trend in the use of tailor-made approaches and pragmatic trial methodology for evaluating effectiveness has been visible in programs ranging from large-scale national health prevention campaigns to community-based initiatives. Qualitative research is used more often for tailoring interventions towards communities and/or local care practices. This article systematically reviews the contribution of qualitative research in developing tailor-made community-based interventions in primary care evaluated by means of the pragmatic trial methodology.nnnMETHODSnA systematic search of Pubmed/Medline and Embase revealed 33 articles. Using a literature mapping process, the articles were arranged according to the development phases identified in the MRC framework for the development of complex interventions to improve health.nnnRESULTSnThe review showed qualitative research is mainly used to provide insight into the contextual circumstances of the interventions implementation, delivery and evaluation. To a lesser extent, qualitative research findings are used for tailoring and improving the design of the interventions for a better fit with daily primary care practice. Moreover, most qualitative findings are used for tailoring the interventions contextual circumstances so that the interventions are performed in practice as planned, rather than adjusted to local circumstances.nnnCONCLUSIONSnPragmatic trials seem to be oxymoronic. Although the pragmatic trial methodology establishes the effectiveness of interventions under natural, non-experimental conditions, no pragmatic fit is allowed. Qualitative researchs contribution to the development of tailor-made community-based interventions lies in providing ongoing evaluations of the dilemmas faced in pragmatic trials and allowing for the development of true tailor-made interventions.

Tailoring intervention procedures to routine primary health care practice; an ethnographic process evaluation

BackgroundTailor-made approaches enable the uptake of interventions as they are seen as a way to overcome the incompatibility of general interventions with local knowledge about the organisation of routine medical practice and the relationship between the patients and the professionals in practice. Our case is the Quattro project which is a prevention programme for cardiovascular diseases in high-risk patients in primary health care centres in deprived neighbourhoods. This programme was implemented as a pragmatic trial and foresaw the importance of local knowledge in primary health care and internal, or locally made, guidelines. The aim of this paper is to show how this prevention programme, which could be tailored to routine care, was implemented in primary care.MethodsAn ethnographic design was used for this study. We observed and interviewed the researchers and the practice nurses. All the research documents, observations and transcribed interviews were analysed thematically.ResultsOur ethnographic process evaluation showed that the opportunity of tailoring intervention procedures to routine care in a pragmatic trial setting did not result in a well-organised and well-implemented prevention programme. In fact, the lack of standard protocols hindered the implementation of the intervention. Although it was not the purpose of this trial, a guideline was developed. Despite the fact that the developed guideline functioned as a tool, it did not result in the intervention being organised accordingly. However, the guideline did make tailoring the intervention possible. It provided the professionals with the key or the instructions needed to achieve organisational change and transform the existing interprofessional relations.ConclusionAs tailor-made approaches are developed to enable the uptake of interventions in routine practice, they are facilitated by the brokering of tools such as guidelines. In our study, guidelines facilitated organisational change and enabled the transformation of existing interprofessional relations, and thus made tailoring possible. The attractive flexibility of pragmatic trial design in taking account of local practice variations may often be overestimated.

Coping with methodological dilemmas; about establishing the effectiveness of interventions in routine medical practice

BackgroundThe aim of this paper is to show how researchers balance between scientific rigour and localisation in conducting pragmatic trial research. Our case is the Quattro Study, a pragmatic trial on the effectiveness of multidisciplinary patient care teams used in primary health care centres in deprived neighbourhoods of two major cities in the Netherlands for intensified secondary prevention of cardiovascular diseases.MethodsFor this study an ethnographic design was used. We observed and interviewed the researchers and the practice nurses. All gathered research documents, transcribed observations and interviews were analysed thematically.ResultsConducting a pragmatic trial is a continuous balancing act between meeting methodological demands and implementing a complex intervention in routine primary health care. As an effect, the research design had to be adjusted pragmatically several times and the intervention that was meant to be tailor-made became a rather stringent procedure.ConclusionA pragmatic trial research is a dynamic process that, in order to be able to assess the validity and reliability of any effects of interventions must also have a continuous process of methodological and practical reflection. Ethnographic analysis, as we show, is therefore of complementary value.

The Role of Screenings Methods and Risk Profile Assessments in Prevention and Health Promotion Programmes: An Ethnographic Analysis

In prevention and health promotion interventions, screening methods and risk profile assessments are often used as tools for establishing the interventions’ effectiveness, for the selection and determination of the health status of participants. The role these instruments fulfil in the creation of effectiveness and the effects these instruments have themselves remain unexplored. In this paper, we have analysed the role screening methods and risk profile assessments fulfil as part of prevention and health promotion programmes in the selection, enrolment and participation of participants. Our analysis showed, that screening methods and health risk assessments create effects as they objectify health risks and/or the health status of individuals, i.e., they select the individuals ‘at risk’ and indicate the lifestyle modifications these people are required to make in order to improve their health. Yet, these instruments also reduce the group of participants thereby decreasing the possible effect of interventions, as they provide the legitimisation for people to make choices to whether they enrol or not and what lifestyle changes they incorporate into their lives. In other words, they present a space of interaction, in which agency is distributed across the practice nurses, the participants and the instruments. Decisions were not just made upon the projection of the outcomes of these instruments; decisions that were made by both the patients and practice nurses were the resultant of their opinions on these outcomes that were formed in interaction with the instruments.

Inclusive Design and Anthropological Methods to Create Technological Support for Societal Inclusion

Large groups in society lack the necessary skills to be sufficiently self-reliant and are in need of personal assistance. They include ageing people, people with low literacy skills, non-natives, but also children. They could all be supported by information and communication technology (ICT), but only if this technology is designed to fit their (cognitive) abilities. Inclusive design theory and methods have already been developed to support participatory design, but they should benefit more from insights of qualitative research and analysis methods developed in the field of anthropology. This allows identifying and interpreting theory-based patterns in generic user needs and human values. We present two case studies of how these methods have been applied to develop ICT for self-reliance of various target groups. By incorporating pattern descriptions in the ‘situated Cognitive Engineering’ framework, this knowledge becomes available for future ICT design and development processes, for other target groups and application areas.

Lessons Learned From a Living Lab on the Broad Adoption of eHealth in Primary Health Care

Background Electronic health (eHealth) solutions are considered to relieve current and future pressure on the sustainability of primary health care systems. However, evidence of the effectiveness of eHealth in daily practice is missing. Furthermore, eHealth solutions are often not implemented structurally after a pilot phase, even if successful during this phase. Although many studies on barriers and facilitators were published in recent years, eHealth implementation still progresses only slowly. To further unravel the slow implementation process in primary health care and accelerate the implementation of eHealth, a 3-year Living Lab project was set up. In the Living Lab, called eLabEL, patients, health care professionals, small- and medium-sized enterprises (SMEs), and research institutes collaborated to select and integrate fully mature eHealth technologies for implementation in primary health care. Seven primary health care centers, 10 SMEs, and 4 research institutes participated. Objective This viewpoint paper aims to show the process of adoption of eHealth in primary care from the perspective of different stakeholders in a qualitative way. We provide a real-world view on how such a process occurs, including successes and failures related to the different perspectives. Methods Reflective and process-based notes from all meetings of the project partners, interview data, and data of focus groups were analyzed systematically using four theoretical models to study the adoption of eHealth in primary care. Results The results showed that large-scale implementation of eHealth depends on the efforts of and interaction and collaboration among 4 groups of stakeholders: patients, health care professionals, SMEs, and those responsible for health care policy (health care insurers and policy makers). These stakeholders are all acting within their own contexts and with their own values and expectations. We experienced that patients reported expected benefits regarding the use of eHealth for self-management purposes, and health care professionals stressed the potential benefits of eHealth and were interested in using eHealth to distinguish themselves from other care organizations. In addition, eHealth entrepreneurs valued the collaboration among SMEs as they were not big enough to enter the health care market on their own and valued the collaboration with research institutes. Furthermore, health care insurers and policy makers shared the ambition and need for the development and implementation of an integrated eHealth infrastructure. Conclusions For optimal and sustainable use of eHealth, patients should be actively involved, primary health care professionals need to be reinforced in their management, entrepreneurs should work closely with health care professionals and patients, and the government needs to focus on new health care models stimulating innovations. Only when all these parties act together, starting in local communities with a small range of eHealth tools, the potential of eHealth will be enforced.

From data to meaningful information for population health management

Background: The quality of the Dutch health care system is found to be one of the best systems in the world. At the same time, it is one of the most expensive systems. To create a more sustainable high-quality system, various attempts are made to find efficient strategies to stimulate population health. One of which is population health management PHM. The use of big data is essential to PHM for multiple reasons. First; in order to optimize health outcomes, one has to know which part of the population will benefit most from changes to be made. Population segmentation is needed and target populations should be defined. Second; data on health care processes and outcomes will reveal improvement potential. And third; data are indispensable to be able to monitor progress of the interventions on process and health outcomes.xa0 The Robuust foundation initiates alliances that originate in regions with local organisations health and social care and public health working together towards population health by PHM. Robuust facilitates them by offering programme management. These alliances use data to define target populations, for agenda setting in their change programmes, to optimise health care processes and to monitor outcomes. Aims & objectives: Our aim is to provide insight in using data for creating meaningful information and value for collaborating organizations including patients in population health alliances. There are a several possibilities to gain insight in population characteristics. We share our experiences on making regional population intelligence using open-source data and data held by organizations and public health providers, primary care and hospitals. We also share our vision on monitoring and evaluation of the value creating process in different alliances. There is no such thing as a blue print on how one can make the best use of different kinds of data for different purposes. For example; ways to define target populations vary by the extent of your population at the start. We know alliances targeting inhabitants of a neighborhood. But we are also operating in alliances targeting inhabitants of entire regions. Our poster illustratesxa0 our experiences on different kinds of data are used and are able to visualize value gain for target populations.

eLabEL: technology-supported living labs in primary care

Telecare technologies and eHealth applications can support patients and care professionals. However, these technologies are currently not being implemented in primary care. The eLabEL project aims to contribute to a solution for this problem by establishing Living Labs in which patients, healthcare professionals, entrepreneurs and researchers collaborate during the selection, integration, implementation and evaluation of such technologies in primary care. So far, seven primary care centers across the Netherlands have been included. Needs and requirements of healthcare professionals and patients regarding telecare technologies and eHealth applications were studied using semi-structured interviews and focus group interviews respectively. Healthcare professionals and patients were positive towards the use of technologies that can improve accessibility of care for the entire patient population and also expressed a need for technologies that can support self-management in patients with chronic conditions. Requirements voiced by care professionals were the need for clear organization of the user-interface, availability of workflow directives for eHealth usage, minimal steps to perform a task, and integration with their current information system. Patients indicated that care technology should be easy to use and easy to learn, should provide real-time feedback based on self-measured data, and should improve communication between patients and healthcare professionals. Entrepreneurs from the eLabEL consortium will integrate their eHealth and telecare services to meet the requirements of the end-users. The large scale implementation of these technologies will be monitored and the impact on experiences of patients, professionals and organization of care will be studied during a two-year follow-up study. Stakeholders of the eLabEL consortium will join forces to advance the large scale implementation of telecare technologies and eHealth applications in primary care.

Patient-oriented support roles of self-management systems

Motivation -- The development of self-management systems has been mainly initiated and driven by health-care professionals, resulting in a primarily medical view on the role of these systems in health care for chronically ill patients. However, lay people consider their health rather in terms of participation and feeling healthy. Therefore, different views regarding the role of self-management systems in health care for chronically ill patients are to be expected.n Research approach -- A focus group was conducted with eight patients with a chronic kidney disease. The role of self-management systems in their daily care was discussed, guided by a scenario that was based on a framework covering functionalities in such systems from a medical point of view.n Findings/Design -- The results show that opinions and expectancies about the role of self-management systems can vary greatly between patients. Furthermore, patients expectancies do not necessarily correspond with the role of self-management systems from a medical perspective.n Take away message -- Expectations about the role of self-management systems should be addressed during all design stages. Self-management systems should be tailored to suit different types of users, for instance by incorporating evidence from the field of human factors.